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Author
Topic: Trouble getting "undetectable" (Read 5861 times)

Started on Truvada & Viramune last July, with a CD4 count of 248 & a VL of 332,495, six weeks or o later I was at a CD$ of 517 and a VL of 656, then in October had a CD$ of 695 & a VL of 152. Got results today from January's blood draw & CD4 is 710, VL is 213. I've been near-religious about taking my meds & have only missed one or two doses, so I don't think adeherence is the problem here.

My doctor is a little concerned that I'm not hitting the <48/"undetectable" level, which he would have expected to have happened by now. He's recommending changing the Viramune part of my regimen to atazanavir & ritonavir, then if I have the "yellow eye" side-effects from the atazanavir, changing that to Darunavir..

Guess I'm a little concerned too that I've not it the "undetectable" benchmark, more as it would be an important mental milestone' for me, though I'm not overly-worried. I think I'm more freaked out at the thought of changing meds due to the "resistance" thing, though I'm aware that my worries there are probably a tad irrational & I'll be better off finding a regimen that works better.

How ya doin? Try not to freak out! I am on the blessed side of a similar circumstance. I started with a CD4 of 8 and VL of 500,000 and those numbers are from last May. My most recent labs have my VL at 30 and CD4 of 323. On Atripla. Here's the deal though...

My doc expected me to be "undetectable" before it actually happened and because it took longer than he expected I started to freak just a little bit. Long story short, I had no illusions about the "pill" working as effectively as it did...it just did. I totally understand your point about the mental benchmark. Needless to say, these labs have made my day more than once.

Your CD4 #'s look good, real good and your VL is way down from the 332,495 mark.Your VL is still a third of what is was...again...not bad. Hang in there! You'll find something that works even better. I can understand your worry about changing meds after the hell I went throught adjusting to Atripla but I will do it again in a minute if the labs dictate. Maybe someone will come along with similiar circumstances...just try not to freak out.

« Last Edit: February 24, 2011, 02:52:45 PM by drewm »

Logged

Diagnosed in May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX - FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS

Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Personally I'd want two viral load tests a week apart before I switch, given your massive CD4 rise. Or two tests the same day done at different labs. Viral load can bounce a bit when "undetectable" from 1 or 2 copies to a couple of hundred, maybe you were just unlucky with the day you tested.

But I agree, a viral load after this long not 50 or below is a concern (but not a panic).

Alternatively, if more tests is not your thing....

If you are on Viramune 1 x day then maybe switching to 2 x day will do it.

Atazanavir can be kind, and is once a day, but so is darunavir, and having taken both reckon darunavir is the easier option. Just for me that is. Will be different for other folks.

Viral load less than 50 is an important clinical and personal benchmark and is worth striving for.

I have had (more than I had hoped for) time enough to explore the situation of people with slower decay and I will be explaining my views in that thread.

I proceed carefully because, for those concerned it is a serious and stressfull matter. Also, some posters on this forum have opinions that differ from mines (on this matter) and it does not help build a fruitfull discussion

The dynamics of phase 2 are being better known and the lead researcher is Dr Siliciano.

and to make a long story short (because I am committed to give the entire understanding I have, but you are asking the question now), this is the take home lesson is:

IF (and I stress IF) the meds work for you, then the second phase decay is mostly driven by the release in blood of virions contained in PREvIOUSLY infected CD4s

in other words, once the meds (and IF it is the case) turn off the fill-in tab, the bathtub of preexisting, HIV infected CD4s has to empty itself.

the dynamics of emptying the bathtub are driven by 4 factors:

A - the amount of previously infected CD4s (bear in mind that your sharp CD4 rebound is not a negligible factor in refilling the bathtub)B - how badly they were infected (how many virions they carry and will release as they die of their natural death). In you case this number can be considered as fairly high c - the lifetime (life expectancy) of YOUR CD4s once the meds have declared the truce on the infection front. This is very personal/genetic, what have youD - last but not least... whether or not the meds are suppressing the virus (closing the fill-in tab)

Where I live, it is customary to declare virologic failure if <50 is not obtained after month 6 (which is where you stand at right now), BUT, a good number of posters in this forum have had the same experience as you, have allowed a bit more time and have finally become UD. But, you can't allow this for too long. Question: how long is too long ?

The tricky thing in giving reassurance that you may want to hold on to your regimen, which, in my personal opinion, and for my own personal profile, is my preferred one (I would prefer Truvada to Kivexa, may be, but, they are kind of similar, anyway), is that the risk of giving you the wrong insight is NOT ZERO.

If I were to advise you to try to hang on to this regimen a bit longer and give it a chance and that advise is WRONG, I would hate myself and so would you.

An other confounding factor is that, based on previous scientific work, studies and guidelines, you should normally not have qualified for Viramune in the first place: current rules is that , since people with VL above 100.000 have a higher risk of virologic failure with Viramune, they are screened out for Viramune.

But now that you have started...and that... Well... the virologic failure is a possibility, I would give it a tiny bit more chance. As Matt said, wait a tiny bit and retest. Also, in my case they did a resistance test on a stored sample. It is possible if the VL in that sample is above 500

This is a very difficult call, I must admit. It is where real doctor expertize (an expertize I do not have) really kicks in

Hang in there just a bit. may be 2 weeks - one month ? Then retest and switch if you have to.

I'll PM you some more interesting article dealing with our common concern.

Also, when I was discussing a possible switch with my doctor the alternative regimen that he offered was to replace viramune with isentress. You may want to educate yourself about this drug. Many people like it and they like it a lot

One last thing that may cheer you up. At month 5 my VL was still above 100 but at month 6 I made it to 48 ! just on time.

I would just IGNORE the previous post, it doesn't apply to you. Very few people have viral loads of more than 50 after a year and go on to achieve this level of viral supresseion on the same combo, most get there in 6-9 months max. If you ain't got a viral load below 50 at the next test then changing is a sensible option if "undetectable" is your goal.

Guess I'm a little concerned too that I've not it the "undetectable" benchmark, more as it would be an important mental milestone' for me, though I'm not overly-worried. I think I'm more freaked out at the thought of changing meds due to the "resistance" thing, though I'm aware that my worries there are probably a tad irrational & I'll be better off finding a regimen that works better.

Would it help to talk a little bit more about your concerns? If you've proven to yourself that you can have good adherence, I don't think you are likely to have any problems -- resistance doesn't develop when you switch straight from one regimen to another -- it is more of a problem when you stop and don't immediately start something else. Is your concern because you are only changing out one drug instead of all three ? or...?

Finally, I know its worrying (I've been there too), but overall it sounds like you have had a great immune response to date and have a doctor who is attentive to treatment guidelines.

Assurbanipal - I wasn't aware that resistance doesn't develope when switching regimes without gaps, so that's a great bit of info.

When I said I was freaked by the idea of switching & resistance occurring, that probably was a bit too strong...guess it makes me antsy, rather than panicky. I'm pretty level-headed & trust that the doctors know what they're doing. I just like to be as informed as I can be about what they're doing, so that I'm not following blindly.

They did a blood draw yesterday & I go back in three weeks to get those results...I think doc will want to change my regime if there's not a drastic change. Which makes sense & I think I'm feeling more comfortable now about going along with that.

I had the genotype (?) test done when I first was diagnosed & that showed I had no resistance to any of the drugs.

This is the nub of what US guidelines say about viral load. Notably that while under 50 (well, 25-75 according to test type) is the target, virological failure is a consistent viral load above 200.

Added emphasis is mine.

---------

For most individuals who are adherent to their antiretroviral (ARV) regimens and who do not harbor resistance mutations to the prescribed drugs, viral suppression is generally achieved in 12–24 weeks, even though it may take longer in some patients.

Optimal viral suppression is generally defined as a viral load persistently below the level of detection (<20–75 copies/mL, depending on the assay used). However, isolated “blips” (viral loads transiently detectable at low levels, typically <400 copies/mL) are not uncommon in successfully treated patients and are not thought to represent viral replication or to predict virologic failure [5]. In addition, low-level positive viral load results (typically <200 copies/mL) appear to be more common with some viral load assays than others, and there is no definitive evidence that patients with viral loads quantified as <200 copies/mL using these assays are at increased risk for virologic failure [6-8].

Incomplete virologic response: Two consecutive plasma HIV RNA levels >200 copies/mL after 24 weeks on an ARV regimen. Baseline HIV RNA may affect the time course of response, and some regimens will take longer than others to suppress HIV RNA levels.

suppression is generally achieved in 12–24 weeks, even though it may take longer in some patients[/b].

I think the US guidelines approach is properly worded and allows some freedom of appreciation for the doctor. It reflects a bit more the real life realities

Our local guidelines, here, state that in case <50 is not achieved at months 6, then the doctor MUST declare and report the virological failure (note: our local definition of virologic failure is notably different and restrictive than the US) and turn the patient over to a specialized team of Hospital virological specialists who will then decide the course of action.

Since this document is given to the patient, and in its wordings, is so dictatorial, the pressure it gives on the patient and their doctor is high.

I know for a fact that my doctor would have ordered a switch no matter what if I had not become UD at month 6, because, strictly adhering to the guidelines is a very strict condition imposed onto him, who currently runs the first and only private, non -Hospital HIV clinic (in my country).

I wished our local 'authorities' had taken a more practical approach, more in line with the US guidelines.The way it is worded, here, locally, sounds like you'd be turned to police if not achieving target in the imposed time frame.

If I had not reached UD in the imposed time frame (which I fortunately did), I know I would have had to fight my way. I would have expressed my desire to give it a chance at least an additional month.I knew it meant a conflict with my Doc (one of the persons I like most in this world).

The only ammo I had were:- information collected from this forum (Thanks!...), scientific articles I had collected on this matter- the US guidelines- a one month stock of meds

It is very unsettling when the patient is exposed to guidelines and other information when they are discordant (eventhough our local guidelines are 95% similar to the US counterpart).

The OP and other (Non US) readers, have a right to know that YES, it may take longer (than 24 weeks) in some patients...

I too have had trouble staying undetectable but I have been going through many vaccinations over the last year and I know that can temporarily drive up the VL. I was also very happy to hit 585 on my CD4's only to see them drop to 382 last week. I'm still waiting on the VL test. I'm hoping it's just a seasonal thing since I also dropped at this time last year.

My physician is happy as long as my VL stays under 500. Also, he doesn't have the highest confidence in the lab we use so he tends to think it's just lab errors most of the time.

Check my numbers below in my profile. It took me 18 months to reach undetectable, though I've remained that way since reaching that goal. I never missed a dose during that time, either. My genotype and phenotype tests, prior to meds, showed no resistance. I don't know why it takes some of us so long to get there, but I always say that it's because my virus is stubborn... just like me!

Diagnosed as HIV positive 11-26-2010 (The day after thanksgiving after spending a week in the hospital with bacterial pneumonia) CD4 Count at that point was 14 (yes, double digits), and I don't recall the viral load (High i'm sure though) Was also kicked out of the house for the next couple months because the doctors at the hospital told my fiance that I got HIV in the last 6 months. (Impossible I know) Actually wondering if I should attempt to sue them? I have a bit of an anger problem though, and anytime I think of it, it infuriates me, so I kinda just want to move on, but at the same time it really pisses me off that it happened.

I was retested on 1-13-2011, CD4 count had gone up to 25, and I don't recall the viral load then either ( I have them somewhere, but don't recall)

Started Atripla 1-13-2011

2-24-2011 Did blood work, and CD4 count went up to 190, and my VL was 1100

That was pretty shocking, as I didn't expect the numbers to jump up that quickly. If there is anyone that has AIDS (below 200) that wouldn't mind talking a little, I could really use someone to talk with. Just general stuff really. I'm 28, and thought I was healthy before being hospitalized with pneumonia, and subsequently diagnosed with AIDS. I have various questions about things that really only someone who has had HIV or AIDS for awhile could answer. I keep asking people, and trying to read things online, but much of it doesn't necessarily apply to someone with a CD4 as low as mine. Really just need someone to shoot questions too if I can.

A couple other things, First, I was shocked to see my CD4 jump that high after about 5 weeks of taking the meds. Is that normal? Also, and I know its different for everyone but..., What's a realistic CD4 for me to get to? Do people with CD4's of 14 starting out actually get back to "normal", which I guess is 700-1000? Definitely before this last appointment I was extremely scared, and felt like I found out too late. Still really scared about the whole thing, but seeing my numbers improve that much certainly makes me feel a bit better.

Next, With the whole HIV / AIDS differential, should I expect to have a shorter life because I found out so late? I've talked to people with HIV and they say no, but at the same time I don't meet many people that had AIDS when they found out, so it could be different.

I was diagnosed last spring with full-blown AIDS. My CD4 count was 8 and my VL was 500,000. I was hospitalized with pneumonia. I started ATRIPLA in June and my current VL is 30 and my CD4 count is up to 323.

A couple other things, First, I was shocked to see my CD4 jump that high after about 5 weeks of taking the meds. Is that normal?

YES

Also, and I know its different for everyone but..., What's a realistic CD4 for me to get to? Do people with CD4's of 14 starting out actually get back to "normal", which I guess is 700-1000? Definitely before this last appointment I was extremely scared, and felt like I found out too late. Still really scared about the whole thing, but seeing my numbers improve that much certainly makes me feel a bit better.

A normal CD4 count is from 500 to 1,500 cells per cubic millimeter of blood. It is more important to pay attention to the pattern of results than to any one test result.

Next, With the whole HIV / AIDS differential, should I expect to have a shorter life because I found out so late? I've talked to people with HIV and they say no, but at the same time I don't meet many people that had AIDS when they found out, so it could be different.

Everyone is different. That being said, the old diagnoses of HIV v AIDS is somewhat antiquated. My doc says we are in new territory, somewhat, in terms of turning back the hands of time in the life-cycle of this disease but that is exactly what we have done. He told me that there is just as good a chance that I will die from old age as I will from this disease but it's important, in the grand scheme of things, to remember that none of us really know when the day will come. There are people on this forum who have lived many, many years with this disease and others have not been so fortunate so it really depends on how the virus reacts in your body and you you react to treatment.

Take a deep breath. Try not to read too much into this bug because it thrives on stress! Live your life just like you were but take care of yourself and hang in there.

Logged

Diagnosed in May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX - FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS

Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Diagnosed as HIV positive 11-26-2010 (The day after thanksgiving after spending a week in the hospital with bacterial pneumonia) CD4 Count at that point was 14 (yes, double digits), and I don't recall the viral load (High i'm sure though) Was also kicked out of the house for the next couple months because the doctors at the hospital told my fiance that I got HIV in the last 6 months. (Impossible I know) Actually wondering if I should attempt to sue them? I have a bit of an anger problem though, and anytime I think of it, it infuriates me, so I kinda just want to move on, but at the same time it really pisses me off that it happened.

I was retested on 1-13-2011, CD4 count had gone up to 25, and I don't recall the viral load then either ( I have them somewhere, but don't recall)

Started Atripla 1-13-2011

2-24-2011 Did blood work, and CD4 count went up to 190, and my VL was 1100

That was pretty shocking, as I didn't expect the numbers to jump up that quickly. If there is anyone that has AIDS (below 200) that wouldn't mind talking a little, I could really use someone to talk with. Just general stuff really. I'm 28, and thought I was healthy before being hospitalized with pneumonia, and subsequently diagnosed with AIDS. I have various questions about things that really only someone who has had HIV or AIDS for awhile could answer. I keep asking people, and trying to read things online, but much of it doesn't necessarily apply to someone with a CD4 as low as mine. Really just need someone to shoot questions too if I can.

A couple other things, First, I was shocked to see my CD4 jump that high after about 5 weeks of taking the meds. Is that normal? Also, and I know its different for everyone but..., What's a realistic CD4 for me to get to? Do people with CD4's of 14 starting out actually get back to "normal", which I guess is 700-1000? Definitely before this last appointment I was extremely scared, and felt like I found out too late. Still really scared about the whole thing, but seeing my numbers improve that much certainly makes me feel a bit better.

Next, With the whole HIV / AIDS differential, should I expect to have a shorter life because I found out so late? I've talked to people with HIV and they say no, but at the same time I don't meet many people that had AIDS when they found out, so it could be different.

Any feedback would be appreciated.

I'm in a similar situation as yourself. Very low CD4 although even a year and a half later I'm still only at a CD4 of 133. I have reached undetectable and overall my health is fine. I'm also 29 (30 in september). If you would like to talk in private you'd have to make at least 3 posts and then we can PM.

I had previously mentioned a number of posters who had a long Time-to-UD and nonetheless became successfull.David_NC is a typical (and encouraging) case. His experience has helped me a lot through that long wait to UD (MANY MANY THANKS ! BTW)

The situation described by the OP (Defarge) and Fri213 are, IMHO, different.

But, Fri213, gives us a good reminder that VL can show a somewhat visible increase due to vaccination or infection, typically flue.

Which is why, the monitoring of VL decay in the beginning of treatment can be screwed by vaccination of infection.

Defarge VL trend is mimicking mine very closely, except that at month 5 he was at about 100 (like myself) but at 200 at month 6 (whereas I got at 48)

Vaccination (or flue) may have been a factor in his case and mine. I, intentionally, timed the flue shot right after a blood draw, hoping for a VL spike (and accelerated flushing of previously infected CD4 cells) to occur while VL is not monitored.

On the other hand, Defarge had a rebound in VL in Dec or Jan (if I understand correctly) which is exactly when the flue epidemic peaks. So, there is a possibility there...

An other poster reported that he checks VL every 3 months and noticed a VL rebound once a year, always in the November test...

Of interest, there are several studies that use advanced techniques to measure VL down to 1.it is found that a significant number (> 50 %) of people who have been UD for a while are in fact at or below 1. This is of course very encouraging.It, therefore shows, that a minority of UD people do not get down to 1...

I discussed it with my doc who confirmed and also commented that for some unknown reasons some people involved in those enhanced analysis are showing VL hovering somewhere between 20 and 50.He told me it is unexplained and, as of current understanding, of little clinical or virologic (resistance...) impact.

The (recently revised) US guidelines, reminded right-on purpose earlier, covers the VL issue in detail. and are consistent with Fri213 opinion that he is doing fine.

Yet, Fri123 is slightly off topic when he says that he <B>TOO</B> have had trouble staying undetectable. because the issue discussed here is trouble <B>getting</B> undetectable.

the 2 issues look similar, but are located differently on the timeline of VL surveillance.

I admit it can be confusing, but, the good news it that everyone is apparently doing fine and upbeat!

to Jager (and others...): your post appeared at same time I was writing mine, so please do not think I was ignoring your question.First, Welcome to the Forum, it is a nice place to discuss things...

Yours is a different question, you do not have a trouble getting to UD (as far as of today).

Yours CD4 (relatively high) rebound may be a transient, the immune system dynamics a very shaky at the beginning, as much a a good sign of long term recovery.Some people on this forum have started even lower than you!

I would recommended that you initiate a separate thread with your legitimate concerns, this way, you will attract more answer that relate to your question

Perhaps my experience will give some encouragement. When I was diagnosed with HIV in September 2004, my t-cells were 90, my t-cell percentage was 12 and my viral load was 750,000. I started on Truvada/Sustiva (now into the one-pill Atripla) right away. My viral load immediately plunged to 2000 but it took a full 14 months for it to reach undetectable. (It hovered in the 100-200 range for most of the time.) While I was discouraged, my doctor was not concerned since my t-cells continued to rise exponentially. Today, after 6 1/2 years on the same medication, my t-cells are 966/32% and my VL has been undetectable since December 2005.

Thanks to anyone that responded. I do have various questions. Especially with state specific stuff. I'm in Maryland, any chance anyone lives here (or did live here at one time) while they had HIV? Otherwise, does anyone happen to know where I could find some info related to things? I know much of the general stuff, but theres definitely some stuff that I still don't understand much. Thanks again.

Posted on Mar 6, 2011 --------------------------------------------------------------------------------You consider it a success if VL is detectable but <200? I thought the goal was to be U/D for resistance reason? Thanks.

On Mar 6, 2011 Joel E. Gallant, M.D., M.P.H. replied:

--------------------------------------------------------------------------------While it's ideal to be undetectable, the new viral load assays are so sensitive that we're seeing a lot of low-level detectable viral loads (in the 50-200 range) in people who clearly aren't failing therapy. This causes a lot of unnecessary anxiety. Clinical trials have been moving to a 200 copy cut-off to eliminate this "noise" (people being classified as virologic failures who weren't really failing), and the recent DHHS guidelines recently did the same thing for the same reasons.

Both myself and my partner had trouble getting undetectable....... until we added 200mcg of Selenium to our daily meds. Our HIV doc (one of the best in Miami Beach) also prescribes adding this to his patients that have a harder time getting undetectable. You can find it at almost any drug store... and it's cheap. You can search here and do your research... but it truly does work (at least for us and others we know).

I was taking Selenium [400 micrograms per day] from the day 1st...for a year.Results: high CD4, and high cholesterol.

There are some studies linking megadoses of Selenium (>50 micrograms a day) and high cholesterol.You don't need extra selenium if you eat fish and nuts. A can of tuna/sardines has 80 micrograms of selenium, which is more than enough.

My VL did go from 300 000 to <50 in 6 weeks tho'.

I still have some selenium and might give it a 2nd chance because my VL is a bit high (41), and my LDL and HDL are normal.

Final thought: Take selenium for a limited period of time, but not more than 200 micrograms a day, and watch your cholesterol.

Diagnosed as HIV positive 11-26-2010 (The day after thanksgiving after spending a week in the hospital with bacterial pneumonia) CD4 Count at that point was 14 (yes, double digits), and I don't recall the viral load (High i'm sure though) Was also kicked out of the house for the next couple months because the doctors at the hospital told my fiance that I got HIV in the last 6 months. (Impossible I know) Actually wondering if I should attempt to sue them? I have a bit of an anger problem though, and anytime I think of it, it infuriates me, so I kinda just want to move on, but at the same time it really pisses me off that it happened.

I had a similar situation. I also had bacterial pneumonia and was in the hospital for about a week. Since my numbers rebounded, a doctor said in front of my partner that I must have recently been infected. I was so angry he would make such a claim when it is impossible to know. I was certain my infection went back many years. Everything I've read about HIV and bacterial pneumonia has said when you are at the point of getting so sick with it where you have to be hospitalized, then you have been infected for several years. From what I've read, you don't get that sick soon after infection, because your immune system is still in pretty good shape. Everything I've read said people soon after infection would be able to fight it--like having walking pneumonia. I suppose there are always people who just progress very quickly. But, a doctor still shouldn't make such claims--especially to a spouse or partner. I'm sorry that happened to you.